New fears and anxiety associated with MS progression
A brain lesion's growth provokes concern — and a likely change in treatments
Note: This column refers to the author’s own experience with Gilenya (fingolimod). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
On a recent Friday, all was calm and peaceful in my household. I was bundled up in my bed watching my favorite podcast while my partner and cat were downstairs hanging out, as they do every night.
To preface this tale, I want you to know that I have the extremely bad habit of constantly checking my email, even after appropriate working hours. I attribute this habit to email anxiety, which I’ve had throughout my time in college.
That said, around 10 p.m. I refreshed my email, not expecting any new alerts. To my surprise, though, I had a note from my neurologist regarding my MRI scans from that morning. Written there were the words, “There is mild progression.”
Shock, fear, sadness, anger, and confusion: Those were the feelings that immediately ran throughout my body. I immediately began sobbing because I wasn’t expecting that news. I cried for hours that night and slept most of the next couple of days. However, I had a follow-up appointment with my neurologist the following Tuesday to go over my blood work and MRIs, which eased my mind a bit.
Tuesday morning rolled around, and I hadn’t slept much the night before. My mom and aunt drove up from San Antonio to accompany me to my appointment, for which I was grateful. We arrived at the doctor’s office about 30 minutes early because I wanted to get it over with.
When my neurologist called me back, I had my mom join me. To begin, my doctor asked me how I was doing. “I’m OK,” I said, but that wasn’t the case; I was beyond terrified about what I’d learn. We immediately began discussing my results.
My mild progression
My neurologist displayed my scans from 2023 and 2024 side by side for comparison. She went through each one of my brain lesions to show which had stayed the same. She then showed a lesion that had grown throughout the year. She deemed it mild progression.
Afterward, my doctor explained our potential next steps, which included monitoring the lesion and/or switching treatments. I decided to change medicines altogether in hopes it’d help preserve my brain from further damage.
For the past seven years, I’ve been on fingolimod (best known as Gilenya), which has kept me stable except for one relapse in 2019. Now, though, I hope to switch to Kesimpta (ofatumumab) within the next few weeks. Before I can begin, though, I need to deal with my insurance and get another round of blood work to check for hepatitis and tuberculosis.
I’d be lying if I said I wasn’t anxious about changing treatments because I haven’t done it since 2018. While this anxiety has taken over my mind and body, I keep reminding myself that everything is going to be OK and I’ll never be alone, thanks to all of the lovely people in my life.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Trish Nafotz
Desiree,
I don't know what you're studying but doing a doctorate will sustain you as much as the medication. Lose yourself in your research. Think of all the new synapses you make each time you learn something new. I read preclinical reports on the medications being developed and I know that even though I am too old, someone like youhas a fighting chance.
Manuela lama
Oh my..... you are right babygirl!! You will never be alone. We will always be by your side through it all!! Don't ever forget that! We might not be down the street but we're never too busy or too far. I love you so much more than you know. 🧡🧡🧡
Joe
I’m sorry to hear about your MRI results. I’ve been on Ocrevus for 2 years and haven’t had any new activity. Since Kesimpta works the same way, I would expect it to be helpful for you as well. Not having B cells is a bummer, but I’ve been healthy and stable since I began my infusions. Best of luck.